The "Knickers In A Twist" Club

I don’t like hate with a passion when “reporters” (In this case, I’m stretching the definition.) don’t bother to take the proper time to do research when it comes to Type 1 diabetes. We already deal with the Diabetes Police, but to see it in print sometimes always sends me into orbit. And this struck close to home.

Like my friends, Kelly Kunik and Melissa Lee, who I see as generals (rocking übercool outfits) in the Diabetic Knickers In A Twist Club rallying the troops when there are inaccuracies in reporting, I realize it’s up to diabetics to point out when the media gets it wrong.

So I did.

The UK Editor-in-Chief of Vice.com will have this snuggled into his inbox for Monday.

Dear Alex,
I recognize that your position at Vice.com most likely does not place you in a micromanagement position, overseeing every tiny thing on your site, but it would be remiss for me to let this article go without mention.

Rachel Hardwick’s article on diabulimia is, quite frankly, rife with inaccuracy that could have been quickly corrected through simple fact-checking. Relying on a single interview with one person who, as she states, is a “recovering diabulimic/bulimic” and not a medical professional or gosh, even Google, is simply poor journalism.

The statistics she has chosen are pulled from articles almost ten years old or, frankly, from thin air. 80% in Australia? I’d love to see a medical journal showing that percentage. (And the use of a possessive “s” rather than a plural? Anyone who writes, even as a full-time intern, should know better.)

Apparently, in the UK, a third of diabetic women between the ages of 15 and 30 are skipping their insulin injections in order to lose weight. In America, the figure’s been estimated at 40 percent, and in Australia at an almost unbelievable 80 percent.

The facts that the subject states are also incorrect.

What else can happen if you skip your insulin?It can make you infertile, you can end up with peripheral neuropathy (damage to the nerves, usually in your hands and your feet), autonomic neuropathy, which means low blood pressure, as well as heart problems and kidney disease.

So the same as undiagnosed type 1 diabetes then – basically really awful. Why haven’t I heard about this condition before?At the moment diabulimia isn’t officially recognised as a mental disorder, but DWED are hopefully getting it in the DSM (Diagnostic and Statistics Manual), which comes out in May. At the moment, they’ll wrongly diagnose you with anorexia, then in hospital they’ll feed you all this high-sugar food, which isn’t good if you’re diabetic!

It’s not the same as undiagnosed Type 1 diabetes. Those individuals, while initially producing small amounts of insulin in their body as the islet cells are killed off, often end up in diabetic ketoacidosis, hospitalized, and hopefully, are treated quickly. If not treated, well, they die. Diabulimics choose to omit insulin on a regular basis, but do not stop taking insulin altogether. They take just enough to keep them out of hospital, but live with very high blood sugars.

The subject states that “in hospital they’ll feed you all this high-sugar food…”. In the almost thirty years that I have been Type 1 diabetic, I have never received a tray of “high-sugar food”, because I was identified upon intake as a diabetic.

(As to why hasn’t Rachel heard about this before? I have no idea. If you Google “diabulimia”, you’ll get thousands of hits and it’s been covered in the media before. I spoke to CNN and dLife TV about it in 2007. Countless medical abstracts and personal blogs highlight it. However, if you’re not a Type 1 diabetic, you probably wouldn’t know of it.)

There is no mention of the psychological treatments of diabulimia that often help women (and men). It’s a psychological issue that manifests physically. The sensationalized article is shoddily written, poorly researched, and unfortunately, if it was meant to draw attention to the single subject’s non-profit, it failed.

Why do I care?

Out of the global diabetic population, only a small segment of us are Type 1, yet we are often lumped in with the Type 2 group. Reporters, even those from major news networks, get it wrong and give misinformation. Without those who know the right statistics and information speaking up, we become gross caricatures of who we really are.

And most of us don’t go blind or have a stroke or lose a kidney or die. Most of us get help with diabulimia, learn from our mistakes, and move on. I should know. I’m living proof.

Oh, my… I can’t even see straight at the moment. As a reporter, I’m just piping mad now. I need to breath. And drink some wine. And then write a letter. And then come back and leave a real, insightful comment about my thoughts on this… (going to flip my switch and channel my inner-K2)

Thank you for standing up for us and for setting that reporter straight! As a fellow T1D, I commend you and your efforts and am so thankful that there are people like you who go the extra mile to correct these inaccurate, misleading and false articles and claims. So thank you!!

I’m sorry if you were offended by my article, but I’d just like to set a few things straight for you:

The figures I mention are figures that I found online after a lot of researching. As diabulimia is a very un-reported and un-researched subject, my sources were pretty limited. However, Jacqueline of DWED did confirm these statistics and I took her word that these are unfortunately the only recorded figures available at the moment.

With regards to ‘what happens when you skip your insulin’ – I quoted Jacqueline word-for-word on this, and assumed I could take what she said as fact considering she is the head of the only diabulimia charity in the UK, I I could only assume that she would have extensive knowledge of the illness. I can’t personally be held responsible for anything that Jacqueline may have got wrong.

Lastly, the quote of me saying ‘So the same as undiagnosed type 1 diabetes, then’, was completely fabricated by my editor. I never said it, nor did I put it in my original copy. She added it in after I sent her the copy (the same as she heavily edited my introduction too). This editing is something completely beyond my control, as a journalist.

Lastly, I’m sorry if my journalism is ‘craptastic’ but I was actually working at Vice as an intern and have limited experience working as a journalist as I am still a student so – not gonna lie – I’m still very much learning. I apologise again if you feel my piece was inaccurate or offensive but you must realise that this is one of the first articles I wrote for VICE, and they’re quite a specific client to please.

Sadly, your apology is couched in excuses and finger-pointing, so I’m having a difficult time with your desire to even respond.

You are absolutely right in stating that statistics about diabulimia are scarce. However, when you do throw out a particular statistic that I targeted, it’s so wildly off the wall that it screams for authentication. If you would, please direct me to the academic research showing that diabulimia is happening in Australia at a rate of 80%, as we’d all love to see it in print outside of your story. (And would that be 80% of the T1 diabetics in Australia between the ages of 15 and 30?)

The role of a good reporter is to take what someone (even a self-proclaimed expert) who is not a medical professional and review the claims for accuracy before it is printed. The same goes for final editing; if there is a grievous error or misquote, then a good reporter fights to have it corrected in print. To blame your subject or your editor is unbecoming. In addition, you’ve had opportunity to correct the piece, but have chosen not to do so.

Whether you worked as an intern or as a seasoned veteran at Vice.com does not matter. Whether you are a journalism neophyte or a Pulitzer Prize winner does not matter. What matters is making sure that what you report is accurate. While Vice.com is not known for hiring award-winning journalists or brandishing the sword for literary justice, a “specific client to please” still deserves accuracy, even from a student, because in the end, your client’s client is the reader of your work. You’ll do well to remember that.

For the record, I was not the one who stated that your journalism is “craptastic”; that is from a commenter. I called it “poor journalism”, and I still stand by that.

I’m sure you’re grateful that you’ll most likely never have to interview another recovering diabulimic, but if you have a need, there are many of us with success stories and connections to medical professionals that would be happy to give you a quote.

Wishing you future success,
Christel (And not Cristel, as you erroneously wrote. Again, it’s about accuracy.)